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  1. Replies
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    So happy to read that Jim is holding his own. ...

    So happy to read that Jim is holding his own. That’s good news. Hoping you can get some much needed rest. Continuing to pray for both of you. Sweet dreams Rose.
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    Our prayers are constantly with you. Gentle hugs...

    Our prayers are constantly with you. Gentle hugs from North San Diego. One breath at a time, one hour at a time, one day at a time. Hang on.
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    The doctors add the umbrella of CP to Tyler's...

    The doctors add the umbrella of CP to Tyler's diagnosis to satisfy the insurance company's need for codes. There is no code for Ohtahara Syndrome or mutation of the SCN2a gene. It drove me nuts for...
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    I feel your frustration and your fears Rose. ...

    I feel your frustration and your fears Rose. Just know that Jim is in the best hands possible for his care. You could teach valuable information in any medical school and be way ahead of the so...
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    You are experiencing so much in such a short...

    You are experiencing so much in such a short time. I would be totally numb. You are an amazing woman, strong and competent. A wonderful mom, wife and the hinge pin your family rests on. Take time...
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    So sorry to hear Jim is having such a rough time....

    So sorry to hear Jim is having such a rough time. Praying for some answers, peace, comfort and rest for you. You continue to be in my prayers.
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    Rose, I just saw your post. My tears flow with...

    Rose, I just saw your post. My tears flow with yours. I have no words that can convey my thoughts, just gentle hugs and fervent prayers for you and Jim. Jon and your family have been such an...
  8. Thread: Jim's Update

    by Tamie
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    There is also a cooling cap that is used to...

    There is also a cooling cap that is used to prevent permanent hair loss. It seems to work pretty well. My friend in Canada uses one for her chemo sessions and she has a full head of very long hair....
  9. Thread: Jim's Update

    by Tamie
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    Been off-site for a while. Tremendous news to...

    Been off-site for a while. Tremendous news to comeback to Rose. I am so happy for you. Looks like you are going to have a very blessed Christmas. Prayers continuing for a complete recovery!
  10. Thread: Jim's Update

    by Tamie
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    Not the news we were hoping to hear. Will...

    Not the news we were hoping to hear. Will continue to pray for complete healing and for peace of mind and heart. Wish I could do more.
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    Hello all...hmmmm, Tyler has been Tyler. A...

    Hello all...hmmmm, Tyler has been Tyler. A couple of UTI's, but reasonably healthy. AD episodes have subsided, which is an enormous relief. Two years of watching him suffer through those nasty...
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    Tyler's surgeon gave me the original sticks,...

    Tyler's surgeon gave me the original sticks, after that, I needed a prescription. You just lightly touch the tip to the granulation areas. Works fairly quickly. Tyler didn't react at all during...
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    I've used the silver nitrate sticks on Tyler's...

    I've used the silver nitrate sticks on Tyler's gtube granulations multiple times when he was little. Never seemed to cause him any discomfort and easy to use. Worked just fine. Recently the...
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    Praying all of Jon's issues will be resolved...

    Praying all of Jon's issues will be resolved quickly. You have enough stress on your plate now. Please be sure to take time for yourself! I know how hard that can be, but oh so necessary.
  15. Thread: Jim's Update

    by Tamie
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    Always great to hear good news. I was worried...

    Always great to hear good news. I was worried the La Tuna fire was going to be a problem for you. My son was on the fire lines for a few days. How is your air quality?
  16. Thread: Jim's Update

    by Tamie
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    So happy to hear Jim is home! Best place for his...

    So happy to hear Jim is home! Best place for his complete recovery. Lots of love, good food and his own bed and routine.
  17. Thread: Jim's Update

    by Tamie
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    Oh Rose, so sorry to hear this. I really dislike...

    Oh Rose, so sorry to hear this. I really dislike doctors who are not sensitive to the dynamics of the whole family. A patient is not an island, independent and alone. Very frustrating to hear how...
  18. Thread: Jim's Update

    by Tamie
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    Praise the Lord! That's wonderful news. ...

    Praise the Lord! That's wonderful news. Rejoicing with you. The world is a little brighter today. Doing a happy dance. Keep up the amazing lifestyle. It's obviously working!!!
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    We decided against a trach. Tyler has had this...

    We decided against a trach. Tyler has had this problem for the past 1 1/2 years with only one bout of pneumonia. Don't see the point. We are very diligent in what we do with Tyler and see no point...
  20. Thread: Jim's Update

    by Tamie
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    That's wonderful news! Rejoicing with you! So...

    That's wonderful news! Rejoicing with you! So nice to get some good news for a change. Keep up the good work.
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    Took Tyler to his swallow study yesterday. They...

    Took Tyler to his swallow study yesterday. They gave him a thinned barium solution, which he promptly aspirated on. Tried a thicker consistency and had to stop the test. Too risky to continue. ...
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    Saw Tyler's neurologist today. He's never very...

    Saw Tyler's neurologist today. He's never very uplifting but bends over backwards to try new things for Tyler. Talked to us about the unconscious spells and has no idea what is causing them, but...
  23. Thread: Jim's Update

    by Tamie
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    Sure glad to hear Jim is out of pain and able to...

    Sure glad to hear Jim is out of pain and able to function better. Nice to hear. Is the heat causing Jon's lymphedema or making it worse? These guys have to deal with enough as it is. Sure hope...
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    Doctors didn't do a whole lot Rose. Took an xray...

    Doctors didn't do a whole lot Rose. Took an xray and did blood work. I had to remind his Primary Care doctor to listen to his lungs. Oddly enough, Tyler is barely coughing. Yesterday was the...
  25. Thread: Jim's Update

    by Tamie
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    Such great news. Hope being pain free allows Jim...

    Such great news. Hope being pain free allows Jim to gain strength and weight to help him fight back. Get some rest Rose. You need your strength too. Continued prayers for all of you.
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    Thanks Rose. Tyler has had pneumonia about 17...

    Thanks Rose. Tyler has had pneumonia about 17 times over the years so we have the equipment. The breathing treatments in the hospital made a huge improvement in his breathing. With the AD episodes...
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    Tyler's at it again

    A week ago today we spent the night in the ER. We knew Tyler wasn't feeling well but there wasn't anything specific in his symptoms. Low grade fever for several days, not sleeping well, sweating...
  28. Thread: Jim's Update

    by Tamie
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    Your situation breaks my heart Rose. So...

    Your situation breaks my heart Rose. So unneeded and made worse by an indifferent medical professional. Is the Keytruda out of the picture? Seems like that doctor would be bending over backward...
  29. Thread: Jim's Update

    by Tamie
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    Rose, you are daily in my prayers. I think about...

    Rose, you are daily in my prayers. I think about your family and what you are going through and wish I could help you in some way. Our lives seem to mirror one another in so many ways. Please know...
  30. Thread: Jim's Update

    by Tamie
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    Hate hearing this Rose. Why can't things just go...

    Hate hearing this Rose. Why can't things just go as planned? That doctor should have been upfront on the protocol from day one. Why waste time when they knew it wasn't going to work? So...
  31. Thread: Tyler's birthday

    by Tamie
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    We ditched the psychiatrist this week and took...

    We ditched the psychiatrist this week and took Tyler off the antidepressnts. They did nothing for the AD episodes. Going to increase the Dilantin dose to see if that will help the nasty seizures. ...
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    Well, Tyler's still being Tyler. We are stopping...

    Well, Tyler's still being Tyler. We are stopping the second drug prescribed by the psychiatrist. Tyler is still having daily AD episodes, sweating buckets, shrieking, coughing and choking on the...
  33. Thread: Pictures

    by Tamie
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    Looks like Kathleen had a wonderful time. She...

    Looks like Kathleen had a wonderful time. She looks so happy.
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    You guys are really being rung over the coals. ...

    You guys are really being rung over the coals. So sorry everything isn't going more smoothly. Chaos drives me up a wall, as does incompetence. Praying for a better week ahead, peace, comfort and...
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    My youngest daughter did this year's ago. ...

    My youngest daughter did this year's ago. Started when she was around 12. Constant headaches with no known trigger. It lasted for several months. She had all the tests available at that time. ...
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    Continued prayers for all of you. Chemo can be...

    Continued prayers for all of you. Chemo can be tough but both my Dad and step mom drove themselves to their appointments and home again. Both had lung cancer. Surprised me. They refused help. ...
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    Rose, that is wonderful news! Continued prayers...

    Rose, that is wonderful news! Continued prayers for all of you. Sure hope you are able to get some much needed help to take the strain and stress off you and Jim.
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    Thanks for taking the time to update us Rose. ...

    Thanks for taking the time to update us Rose. Sounds like you have a great team working with you and Jim. That's what it takes.

    Jerry and I eat a WFPB diet. No meat, fish, oil, dairy, processed...
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    I have no words Rose, just gentle hugs for you...

    I have no words Rose, just gentle hugs for you and Jim. We've dealt with cancer and know all the uncertainties you are experiencing. Thoughts and prayers on this journey. Know you are not alone.
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    Thanks for the update Rose. Glad Jim came...

    Thanks for the update Rose. Glad Jim came through the test OK and you received the results so quickly. Nothing is harder than waiting. Sure wish we lived closer. I would love to spend time with...
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    Praying for you and Jim today Rose. Update when...

    Praying for you and Jim today Rose. Update when you can.
  42. Replies
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    Was hoping for better news. My brother had a...

    Was hoping for better news. My brother had a similiar mass and it was cancer. He had a portion of his lobe removed and is doing just fine. Praying the mass isn't cancerous or if is, is treatable. ...
  43. Thread: Tyler's birthday

    by Tamie
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    This is the Neuro that originally diagnosed the...

    This is the Neuro that originally diagnosed the OS. The biggest problem is that the majority of OS kids pass before their 5th birthdays. There are only a few kids around the world that have...
  44. Thread: Tyler's birthday

    by Tamie
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    Well, Tyler has another UTI. Took a sample in...

    Well, Tyler has another UTI. Took a sample in last Saturday and found out someone dropped the ball and didn't culture it. Took another sample in today. They have put him on Keflex until they get...
  45. Thread: Tyler's birthday

    by Tamie
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    Tyler's birthday

    22 today. Spending it at the clinic hooked up to a 6 hrs. EEG. Yippie, only 3 more hours to go. Happy Birthday sweet boy. You are amazing.
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    Sebastian (Jens son).

    Sebastian (Jens son).
  47. Thread: Our Black Friday

    by Tamie
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    Wish we lived closer. I'de come and help you...

    Wish we lived closer. I'de come and help you out. Happy to hear Jon is a bit better and you are finally getting some of your supplies. You have to get some rest though.

    I've had company for...
  48. Thread: Our Black Friday

    by Tamie
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    Tyler is miserable. Been shrieking all morning. ...

    Tyler is miserable. Been shrieking all morning. He's wearing a cardiac event monitor and hopefully getting a lot of usable data. Took him to the ENT appointment last Wednesday. He had a...
  49. Thread: Our Black Friday

    by Tamie
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    You can only do so much Rose. Caregiving is an...

    You can only do so much Rose. Caregiving is an exhaustive endeavor built around love and endurance, not superhuman strength. Don't beat yourself up. We live in a "me, me, me" entitled society with...
  50. Thread: Our Black Friday

    by Tamie
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    That's terrible Rose. This problem has been on...

    That's terrible Rose. This problem has been on the news a lot. People follow the UPS; FedEX; Amazon; etc. drivers out of the dispersal centers and just take what they want when the packages are...
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    Jaxon is on 500mg of Keflex and on a course of...

    Jaxon is on 500mg of Keflex and on a course of Bactrim as well. The doctor wanted to cover all bases. Nothing slows him down for long. Trying to keep his hands off is a challenge however. Sure...
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    Just heard from my daughter. It was MRSA. We...

    Just heard from my daughter. It was MRSA. We dodged a huge bullet by acting swiftly. You just don't mess with infections. So dangerous.
  53. Replies
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    So much for no surprises. Tyler's screaming was...

    So much for no surprises. Tyler's screaming was due to another UTI. First since August 31st. Waiting for the culture to get back, but the Urologist is putting him on Cipro in the mean time. He's...
  54. Replies
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    Had to drop Tyler's Dilantin dose down all at...

    Had to drop Tyler's Dilantin dose down all at once. Just too high to mess with. So far, we've seen a few more seizures, but not as bad as we feared. Have a 6 hr. EEG scheduled for Dec. 6, an ENT...
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    Happy belated birthday to Jon. Happy to hear he...

    Happy belated birthday to Jon. Happy to hear he is having a much better day! Sounds like you have a lot going on Rose. I seriously need to get more organized with Tyler's supplies. I know who to...
  56. Thread: good news...

    by Tamie
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    Good for you Mary Grace. We always opt for...

    Good for you Mary Grace. We always opt for natural over pharma when we can. Keep up the good work. Hope it makes you feel much better.
  57. I never missed an episode of Time Goes On. ...

    I never missed an episode of Time Goes On. Wonderfully show. Sadly, all of the quality shows are short lived. Some nights it is hardly worth turning the TV on.

    Tyler's about the same. Never...
  58. I watched about 15 minutes of the first show and...

    I watched about 15 minutes of the first show and decline to watch any more. It was pretty obvious to me what direction this show was taking. Hollywood wouldn't know how to put on a class act to...
  59. Thread: Tyler Update

    by Tamie
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    I'm doing OK Rose. Tire more easily, but other...

    I'm doing OK Rose. Tire more easily, but other than that, up and running. Tyler's 72 hr. EEG was a bust. They hooked him up to 27 leads and then sent us home with miniscule supplies to keep the...
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    Had a mild heart attack over the weekend. ...

    Had a mild heart attack over the weekend. Thankfully no apparent damage to my heart. The cardiologist thinks a bit of plaque broke off in one of the coronary arteries and blocked the blood from my...
  61. Thread: Tyler Update

    by Tamie
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    Thanks Rose. Tyler has been pretty miserable the...

    Thanks Rose. Tyler has been pretty miserable the past few days. Just found out this morning that the urine sample we took in was contaminated by multiple bacteria. Have no idea how, but we took...
  62. Thread: Tyler Update

    by Tamie
    Replies
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    Tyler has the 72 hr. EEG scheduled for Sept. 30. ...

    Tyler has the 72 hr. EEG scheduled for Sept. 30. We take him to San Diego at 8:00 in the morning, they hook him up and send us home. Have no idea what happens from there or what equipment we will...
  63. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    Tyler's tests were a nightmare. The blood work...

    Tyler's tests were a nightmare. The blood work all came back normal (I expected this, but it would have been nice to get some answers the easy way). We did not raise up Tyler's Dilantin to 400mg a...
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    That's great news Rose! Big cause for...

    That's great news Rose! Big cause for celebration. Curious as to how Witch Hazel works for Jon. Happy it did, but how? Always looking for more natural ways to help Tyler. Hard to see them in so...
  65. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    It goes endlessly, endlessly on. Primary Care...

    It goes endlessly, endlessly on. Primary Care doctor says Tyler has metabolic acidosis. Really..Wants to run more tests to determine the cause. Tyler has an EEG on Monday, a CT scan on Wednesday,...
  66. Thread: Tyler Update

    by Tamie
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    15,916

    We need some good news. Tyler's temp is going...

    We need some good news. Tyler's temp is going back up. Just gave him more Motrin. Took a couple of videos of the unresponsive episodes so I can show the new Neuro exactly what we are seeing. On...
  67. Thread: Tyler Update

    by Tamie
    Replies
    66
    Views
    15,916

    We need some good news. Tyler's temp is going...

    We need some good news. Tyler's temp is going back up. Just gave him more Motrin. Took a couple of videos of the unresponsive episodes so I can show the new Neuro exactly what we are seeing. On...
  68. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    We had a urine test done on Thursday, but no UTI....

    We had a urine test done on Thursday, but no UTI. Have no idea what is going on with him. He is on nitrofurintoin once a day to try and prevent UTI's. The Neuro wants us to go back up to 300mg a...
  69. Thread: Tyler Update

    by Tamie
    Replies
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    I've been up with Tyler since 3:00, seizing. ...

    I've been up with Tyler since 3:00, seizing. Started gagging and retching at 5:00. Temp is 101.5. He is either coming down with something or fighting an infection from somewhere. Not what he...
  70. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    Where do I start??? Took Tyler to the...

    Where do I start??? Took Tyler to the Neurologist yesterday. Spent about an hour in his office while Tyler sweat and seized. The doctor is concerned about how much of the symptoms are neurological...
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    Seriously Rose, don't the powers that be, ever...

    Seriously Rose, don't the powers that be, ever get tired of messing with our boys? Withholding Jon's formula is tantamont to murder by the State. That just irritates the heck out of me. You need a...
  72. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    They rescheduled the test to the 2nd and put...

    They rescheduled the test to the 2nd and put Tyler on Cipro.
    Because Tyler would be on day five of Cipro, the doctor agreed to go ahead with the test. She did everything she could to try and...
  73. Thread: Tyler Update

    by Tamie
    Replies
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    15,916

    Tyler had his Urodynamic test yesterday and...

    Tyler had his Urodynamic test yesterday and passed it with flying colors. I wanted to sit down and cry. The doctor tried everything to irritate the bladder into a spasm with no luck. No spasms, no...
  74. Thread: Tyler Update

    by Tamie
    Replies
    66
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    15,916

    Urologist's office just called. They knew Tyler...

    Urologist's office just called. They knew Tyler tested positive for the same bacteria that has been plaguing him since April. They decided if he wasn't symtomatic, not to treat him and didn't tell...
  75. Thread: Tyler Update

    by Tamie
    Replies
    66
    Views
    15,916

    Just got back from the cabin. Tyler had...

    Just got back from the cabin. Tyler had miserable nights. Last night his temp went up to 101.6; sweating profusely, constant seizures, gagging and retching, urine cloudy this morning and a slight...
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